Building an Inclusive Rights Agenda for Autistic Adults: Joint Statement from ASAN and the Republic of Malta

PRESS RELEASE ISSUED BY THE PARLIAMENTARY SECRETARIAT FOR RIGHTS OF PERSONS WITH DISABILITY AND ACTIVE AGEING

Building an Inclusive Rights Agenda for Autistic Adults: COSP9 side event held by the Government of Malta in collaboration with Autistic Self Advocacy Network

Malta, through the Parliamentary Secretariat for Rights of Persons with Disability and Active Ageing, had the privilege of hosting a side event at the United Nations addressing the rights of autistic adults. The event was historic in nature, representing the first United Nations side event where every invited speaker was autistic. This was held as part of the 9th Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD).

This side event is in line with Malta’s continuing commitment to the principle of ‘Nothing About Us, Without Us’, enshrined in the UN CRPD, and specifically focusing on Malta’s passage of the ground-breaking Autism Spectrum (Empowerment) Act. The Maltese Parliamentary Secretary for Rights of Persons with Disability and Active Ageing Dr Justyne Caruana, who chaired the event, said that Malta’s participation in this conference of states parties is a clear statement that the disability sector is close to the Government’s heart. She noted that Malta is proud to be amongst one of the first countries in Europe to have enacted legislation that specifically mandates autism acceptance within society.

Ari Ne’eman, President of the Autistic Self Advocacy Network (ASAN), spoke about the needs of autistic adults to receive both respectful and adequate services and supports. He called for a shift in culture surrounding service-provision, most particularly approaches towards home- and community-based services, in line with the CRPD obligation to advance community integration for people with disabilities.Noting and celebrating the progress of the de-institutionalization movement, Mr. Ne’eman called for continued progress in full inclusion of autistic adults and other people with disabilities in the community, encompassing the full scope of the autism spectrum’s strengths and challenges.

Samantha Crane, Legal Director of ASAN, spoke about the issue of legal capacity, another issue at the core of the CRPD, and one which greatly affects autistic adults, especially when they approach old age. She spoke of the harms associated with guardianship as well as best practices in supported decision-making, drawing upon a number of examples from different jurisdictions in Europe, the United States, and further afield.

Sara Liss, Staff Attorney at Disability Rights New York, spoke about the issue of employment, a core challenge in the autistic community. Her emphasis was on the shift from token employment and sheltered employment, towards employment that takes into account the strengths of autistic persons, as well as the concept of reasonable accommodations, and practical ways in which such accommodations can efficiently but inexpensively be implemented in everyday life.

Finally, Finn Gardiner, Director of the ASAN of Boston, spoke about challenges for autistic persons in accessing healthcare. In particular, the issue of misdiagnosis of adults was addressed, in which many persons fall through the net, based on particular stereotypes healthcare providers have of what does and does not constitute an autism diagnosis. He also focused on the need for healthcare approaches which are inclusive, rather than abusive.

The session then discussed a myriad of issues, including the importance of including the full scope of the autistic community in policy considerations, expanding integrated employment outcomes, the importance of self advocacy, community-based participatory research, post-secondary transition strategies, and the issue of autism and ageing.

Parliamentary Secretary Caruana concluded the session by noting the importance of learning from the self-advocacy sector in order to draft and also better implement policies that truly leave no one behind.

Full video of the event from the United Nations: http://webtv.un.org/search/autism-and-the-crpd-building-an-inclusive-rights-agenda-for-autistic-adults-cosp9-side-event/4944503049001?term=autism
Official video from the Republic of Malta: